Loneliness and Family Burden: An Exploratory Investigation on the Emotional Experiences of Caregivers of Patients with Severe Mental Illness

Article excerpt

We present here an exploratory descriptive investigation about the needs of the caregivers of patients with severe mental illness (SMI) referring to a mental health service of a Southern Italian city. Twelve caregivers were queried, as experienced contacts, about their own emotional involvement and their relationship with the patient by means of a semi-structured interview. Interviews were subjected to a qualitative thematic-categorical analysis. The results reveal painful experiences of anguish and feelings of inadequacy stemming from care-giving which gravely impact the caregivers' personal well-being and family relations. Keywords: Family Burden, Communication of Diagnosis, Severe Mental Illness, Sense-Making Process, Qualitative Research

A diagnosis of severe mental illness (SMI) prompts, within the family, organizational efforts aimed at treatment and support which end up inevitably involving the whole family group. (Dice et al., 2015). It is a critical moment in the medical activity and its understanding can allow transforming steps in the comprehension of illness in the patient and his/her family (De Luca Picione & Freda, 2016a, 2016b, 2016c; De Luca Picione, Dice, & Freda, 2015). In this paper we intend to observe processes of signification attributed, in the family context, to the psychiatric diagnosis and the consequent possibilities of decline in daily life. As health providers, we consider these aspects as a central point for the doctor-patient relationship, in order to implement best practices for taking care patients and support their families (Freda & Dice, 2017; Dice, Dolce, & Freda, 2016; Martino & Freda, 2016a; De Luca Picione, Dice, & Freda, 2015; Freda et al., 2014; Martino et al., 2013).

In fact, it is becoming an increasingly frequent observation that a specific individual (e.g., a parent or sibling) tends to take on him- or herself most of the duties related to the care of his/her dependent (Hermanns & Mastel-Smith, 2012; Jeanty & Hibel, 2011). Chiu et al. (2013) recently showed how the role of caregiver is often tied to a large amount of emotional work such as meeting patients' emotional needs. These individuals are called on every day to care for their dependents, who often hold no job and require daily assistance to satisfy their needs (Furlong & McGilloway, 2012; Jagannathan et al., 2011; Kate et al., 2013; Wheeler, 2010). Chiu et al. (2013) also showed that relatives of patients with SMI frequently suffer from some kind of emotional disorder. This suggests that the heavy family burden associated with caregiving responsibilities might be a psycho-social risk factor (Van Parys et al., 2014); indeed, several studies show that the role of the caregiver is often associated with anxiety, depression, fears and worries, feelings of guilt or loss, psychosomatic complaints, as well as experiences related to social stigma. Moreover, the caregivers of psychiatric patients often experience emotions pertaining to secretiveness, loneliness, fear, pain, and anger, as well as overwhelming guilt for having borne a child with SMI (Kate et al., 2013).

In light of this scenario, it is generally recognized that family-targeted interventions can improve the relatives' emotional well-being, and support the caregivers in their undoubtedly important role to their dependents. It becomes necessary to focus carefully on the caregiver's emotional state (Caqueo-Urizar et al., 2011; Furlong & McGilloway, 2012; Kate et al., 2013) lest his/her health deteriorate and symptoms should emerge triggered by the inordinate burden of caregiving. This, in turn, will bear beneficially on the treatment of the patient. This is the reason why mental health service providers often include well-being and quality of family relations as indicators of the standard of care provided (Asmal et al., 2014; Caqueo-Urizar et al., 2011; Hansen & Buus, 2013; Kate et al., 2013), and why paramount importance is attributed to the emotional consequences on relatives of living together with and constantly caring for a patient with SMI (Howe et al. …